Discussion in 'Active Clinical Studies' started by catly, Oct 9, 2013.
Recieved the following email toay:
it would be interesting to compare the supplement only also?
Ritalin is use for POTS, so that might explain how it could help in ME/CFS:
nonetheless, I'd be reluctant to use it even with mitochondrial support. Ritalin may not continue to be effective in the long term, making it a questionable choice for a chronic condition.
My understanding after watching the video was that this treatment could improve immune function through improving mitochondrial function. Apparently something similar to this treatment helped improve cd4 numbers in HIV patients which is a sign of improving immune function.
So maybe its working through a few different mechanisms.
NK function was brought up in the Q and A, i think it was mentioned that maybe montoya or klimas maybe measuring this in their patients involved in this study??
One thing i didnt quite understand was their choice of stimulants. It seemed that ritalin was choosen as they make it in a lower strength, surely they could have lower strength drugs made. Why i mention this is that i think modafinil in low doses could be a good fit for us as there are studies, some on MS patients where it shows modafinil is neuroprotective. This seems like a good quality and an additive effect to the antioxidants being used in this current study??
I'm trying to get modafinil but my ins company has denied it so far. Walgreens wanted $5?? For 30 pills.
I see there's a sublingual. Has anyone tried it ?
Chewing about 1/4-1/3 of a caffeine pill really made a difference for me until I got a uti which was probably from a stone.
It makes me motivated as well as clears my head. I go from wondering if I can stand up (OI) long enough to do the dishes to doing the dishes and more. That all stopped when I got this infection tho.
I don't understand why I feel motivated too but saw it referred to when googling modafinil. I've never been one to sit if I had things to do but didn't realize it was related to chemicals in my body.
Tc .. x
I'm with you on the caffeine, and there's a very good physiological explanation. Caffeine is a well-known adenosine receptor antagonist, which, among other things, constricts blood vessels and helps tremendously with my POTS. It also stimulates the release of dopamine, of which many of us are deficient.
In fact, every morning I sit on my haunches like a jungle cat for a few minutes, then spring toward the coffee brewer for my daily dose.
At first I really didn't know what to think of this trial, an acquaintance of mine emailed me the news to me several months ago.
Let's say I was not impressed nor excited, even if Dr. Montoya's clinic is involved.
Now I see this combo formula (generic low dose Ritalin + nutrients) as a potential help to some of us who happen to be mainly in the CFS zone of the ME/CFS spectrum.
I certainly can't judge for others, but for me it would be like doping a horse with a dysfunctional immune system and a serious inflammatory component, it's simply not wise or indicated ...
My ME doctor is not participating in this, but passed along the info in an email yesterday (they're looking for 40 more participants, enrollment open until early August).
PM me if you'd like to get the info passed to you.
I'm getting a similar reaction but only to caffeine pills nowadays.
I just started taking a tiny bite, like a crumb, as soon as I get up in the morning to see if it will stop me from crashing with hypoperfusion after breakfast.
I still HAVE to lay down post making and eating breakfast but I'm not feeling the blood rushing into my upper body like I was. Kow.
Too much caffeine makes my heart race so I'm always watching this.
I was shocked that it affects my motivation.☺
Tc .. x
I have me/cfs but mine appears to have been from untreated gluten sensitivity since so many of my neuro problems resolved or lessened via diet.
I still have a dysfunctional immune system, dx list is like that of an 80 year old, but at 58 and after 9 years on the gf then mostly paleo diet, I'm willing to carefully try pushing myself.
My hope is that increased activity will help my OI which may help my pem. My goal is to stop laying on the couch so much.
My me/cfs started with a virus / chronic bronchitis. For which I was prescribed 3 rounds of antibiotics. These were probably quinolones based on my recent negative reaction which is the same as I got in 1990.
I didn't heal from this until 2006-7 because I was eating gluten until 2005.
I healed within months this time.
This lead to complete disability and a dx of me/cfs.
Tc .. x
I am surprised they already advertise all the ingredients for the supplements which is good to know. Does anyone know the dosage of Ritalin??? Would love to get my doctor to try it on me without having to fly to New York four times in four months to find out I was placed on Placebo...
So I saw my ME/CFS specialist today and now that I'm off of Valcyte, I qualify for the study and I decided to enroll despite all the warnings I've read on this site and others regarding ritalin. So far since I've gotten ill, I haven't had trouble tolerating with any meds or suppliements so hoping this helps and doesn't make things worse.
There was a lady in the waiting room who's been ill for 20 yrs and is just finishing the trial, she says she's much improved. Of course, since it is a randomized trial, there's a 50% chance of getting the placebo.
@RUkiddingME, the dosage of Methylphenidate is 10-20mg. per day according to the study website http://thesynergytrial.org/.
Just a little update.
I started the trial meds on the 12th of July, so a little over a week ago. So far not feeling anything, positive or negative.
They are recruiting at least until Aug 1st but I think they may be extending it if they don't get the enrollment numbers they are looking for.
Which meds are you referring to ? Are you taking the supplement too ?
I ask because I needed a B nutrient source + caffeine to feel better. At this point I don't have a B supplement I can tolerate so I'm using vitamin water xxx. I'm sure there's something better but I'm burned out on trying new B supps.
Btw. I've stopped taking caffeine on most days. My heart was skipping beats.
Tc .. x
@xchocoholic it's a randomized trial. You either get the ritalin + the supplement or you get a placebo.
I was already taking most of the ingrediants in the supplement prior to starting the trial. I had to stop many of them in order to participate. I guess I'm just not that sensitive to supplements/meds like most others are.
You can buy the supplement directly from K-PAX, but it has a lot of stuff in it, so if you're sensative to supps, it's probably not a good idea.
You said you didn't notice anything and I was wondering why.
I feel energized from B supplements, caffeine and modafinil / provigil. The problem is that I crash or become intolerant to these or both.
Tx .. x
Hi Everyone -
I'm a patient of Dr Montoya's and was a participant in the Synergy Trial.
The protocol is a generic Ritalin 5 mg 2x day to start and if tolerated increase to 10mg 2 xday.
In addition, the nutritional supplement is the Immune Support supplement made by K-Pax Pharmaceuticals.
I have to say that I was feeling pretty great on this protocol. Even though I knew it was largely due to the Ritalin and was artificially induced. We realized quickly that I had gotten the real thing ( it is a double blind study) because I mis-understood the Ritalin dosage (due to brain fog) and doubled the dose right off the bat.
I was wired and after 1 week we figured it out and lowered the dose back to 5mg. During this time in July I traveled to a very hot part of the country and when I ended up in the ER severely dehydrated, I was dropped from the study.
Did not agree with being dropped as I believe it will skew the results if anyone who has issues are dropped.
Dr. Montoya has given me a script for Ritalin and after speaking with K-Pax directly they would give me a discount to buy the Immune Support... Obviously still too expensive being on SSDI.
I'm happy to answer any questions that anyone might have.
I did debate about the study for some time and finally decided to give it a try. Why not?
Nothing else seems to be working any miracles....
Guess I signed up for K-Pax emails, here is a recent one:
"K-PAX Pharmaceuticals is applying for a grant from Chase Bank and Google. We really need this grant to aid us in successfully navigating the FDA's reglations and gaining approval of the first FDA approved treatment for Chronic Fatigue Syndrome (CFS) - a disease for which there is currently no approved treatment.
We have submitted our application but now to be considered we need your vote!
250 of them!
Click Here to go to voting page for K-PAX Pharmaceuticals
(your information will kept private and not used for solicitation of any kind)
On the page it will ask for business name: Key in K-PAX
Once you're on the page click the VOTE button!
Thank You, Thank You, Thank You!"
I tried Ritalin more than a decade ago for ADD and one 5mg dose had me so high the TV was "waving". It was trippy, but did nothing for the fatigue. It did have me paying attention though, I was hyper-focused on the way Bart Simpson was undulating.
It will be interesting to see what the results of the study are.
The Immune Support made by K-PAX was impressive...
I did have to stop some of my own supplements while taking it as there was redundancy.
It's a shame that it's so expensive though since most of us with CFS can't afford it.
When my son was taking ADD meds they made him fall asleep.
You can also try a Google Site Search
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